Happenings & it hasn't even been a week!

So, I've been up a few hours and have eaten, texted, surfed and cleaned all I can quietly so I don't wake up Mikaela.  Yes, it is noon and she is STILL asleep.  I think it is because she was up with belly pain quite a bit in the night (at least I hope that's what it is and that it isn't her ammonia, she mentioned she felt a bit weird last night before bed-I'll keep my fingers crossed!)  Maybe it's just becuase she is a teenager??!!  We forget to think about "normal" things sometimes.

Anyway, Friday, we had labs and then an appt with the liver dr., whom we really like.  We really like his nurse, Amy, too.  In fact, she used to be our transplant coordinator.  The first time we came down here, July of 2004, for Mikaela's 3 day evaluation which included about a million appts with a dozen different specialists we first met Amy and she was the only one in all of those appts who actually made Mikaela smile and say a few words!  She's very caring, intuned and relates well with Mikaela.  So, Mikaela's labs didn't show anything out of the ordinary for her- in fact everything was pretty much exactlly were it was at the last labs.  We were happy but a bit surprised that her ammonia wasn't a bit higher based on how Mikaela was feeling.  It is nice when labs stay stable but frustrating at the same time because then there isn't a specific reason for why things hurt and are so uncomfortable.  They are thinking that her body has just "hit a wall", which is not uncommon for patients at this stage of things.  Since there isn't much else they can do, Mikaela will basically have to keep doing what she has been and deal with it as best as she can.  Somedays, that is easier then others.  I mean let's be real-I would have been at my limit sooooo long ago.  She is amazing but as anyone would be, she is sick of being sick, sick of being in the hospital, sick of medicine(4times a day), sick of procedures, sick of being away from school and friends, sick of being away from her own room and stuff and just plain sick of dealing with and worry about every HUGE thing she has to deal with.  And all I can say is- hang in there, you're doing great, it will be ok, I love you and I'm sorry. 

Moving on to Saturday - we had the exciting anticipation of Gram, Nichole and her 4 little ones coming to visit.  We were going to see Tangled, hang out , color, play games and be entertained by the funny little things only a 6yr old, 2 -4yr olds and a 1 yr old can muster.  And then...a phone call saying Nicholas has a cough and stuffy nose so they are going to stay clear and not spread any germs-just in case.  BUMMER!  but, that is always for the best.  So, we thought maybe we could work out something for Sunday.  Yep-Mom would go to Nichole's and watch Nicholas and then the girls could come for a day visit.  But then...ice storm followed by snow expected Sunday morning.  Ok...there goes that idea.  It wasn't meant to be for this weekend.  We are planning/really hoping  next weekend.  It's crazy that I am finally closer to my sister but don't really get a chance to see her too much.  I guess that's just how it goes sometimes.  Since the weather was supposed to be touchy on Sunday, Mom was planning on heading to Nichole's on Saturday.  But first, we went to a movie, then Mikaela and I looked around Old Navy-found nothing we couldn't live without, went to get some groceries, then went for a drive, grabbed some dinner and then mom dropped us off at the RMH and she headed north for Nichole's.  She was temped to stay until this morning but didn't want to get snowed or iced in since we have more visitors coming in this evening and our room is pretty tiny for too many.  It turns out the weather wasn't as bad as predicted (what a surprise!!) so she could have stayed. 

We are now excitedly waiting for Marsha, Molly and Lori to arrive and to hang out with for the next couple of days!!  It is always fun to share our little world and no matter what we do, we are hoping to have some laughs and make some memories.